Having suffered with 25 years of rheumatoid arthritis, I wondered if the constant pain had been a protector, not just physically but spiritually, mentally and emotionally too
Pain is a protector, said the expert on the radio, it alerts the body to slow down and make changes to prevent further physical damage.
Having suffered with 25 years of rheumatoid arthritis, I wondered if the constant pain had been a protector, not just physically but spiritually, mentally and emotionally too.
Being diagnosed with rheumatoid arthritis, a long term autoimmune condition that causes swelling, stiffness and pain in the joints, at the age of 15 was a shock. We had no family history of the disease and I didn’t fully grasp what it even meant at the time. All I knew was that suddenly I was receiving hospital letters and pretty strong medication. I started frequenting specialist clinics and having regular, rather unpleasant blood tests. I would sit and look around for hours in the waiting room. The average age of patients being probably around 60. What was I doing here? I didn’t belong. It felt like a bad dream.
My mum came to a few of my early appointments but they became so regular I often went alone after that, navigating the London tube and bus networks. Being on my own was scary. I wish someone had continued to come along, face these difficult appointments with me, provide a supportive word or smile. Children often feel safe in the protection of parents when they fall out with a friends or suffer a netball injury at school. Then something happens that our parents can’t possibly pre-empt or protect us from, but their presence is still so reassuring and can banish the loneliness and fear triggered by difficult events. At 15 I wasn’t a child, but emotionally I still needed that. I was lonely in my thoughts, worries and pain and it all seemed overwhelming.
The winters meant morning stiffness in my fingers and I could hardly move them on waking for an hour or two. Stay in bed for longer, the consultant would advise, the natural steroids released on waking will help loosen things. But I didn’t want to stay in bed – especially not if I had to! I wanted to jump up light and care free like my siblings, friends and it appeared EVERYONE else could. The strong drugs made me sick, gave me acne and needed constant monitoring to ensure they weren’t damaging my ‘good cells’. I would read the leaflet and be horrified at the side effects and possible problems they could cause. I would find myself crying with indignation for the children I may never have or who would be born deformed or sick as a result of my treatment. But I would worry about stopping the drugs and ending up with the disfigured hands I would observe on patients in the hospital waiting room.
I was in a constant state of hope and fear,
This was heightened when I was lucky enough to be planning a pregnancy many years and a marriage later. No unplanned pregnancies for me- certainly not! It needed to be calculated, communicated and sensible. I would have to stop the drugs months before conceiving, hope and pray I stay well without them throughout pregnancy and breastfeeding months, before resuming once again. I was lucky enough to do this 3 times resulting in 3 beauty children.
But each time the stress was elevated. The hospital appointments more commonplace and the pain and swelling grew in my hands and ankles almost as fast as my bump. Without the medication I suffered. More stiffness, pain and swelling. Other safer medications were offered to me and sometimes I would try them, but I felt protective of my babies and didn’t want to risk taking medicines, no matter how safe the research had shown they were.
As my children grew, I continued to attend appointments, 12 weekly blood tests and some bonus eye tests to check for long term damage. As my fingers started to change shape a little I needed occupational health visits too, with some attractive fingers and arm splints thrown into the crazy mix! I was more prone to injury I was told as a result of both the disease and the treatment. This didn’t stop me running, cycling and playing basketball. Until I suffered broken ankles and a devastating back injury. I had to concede defeat at least in the short term and recover. I would be back but to slower gentler exercises like swimming and long walks. I was yet to hit 40 but my body was letting me down much sooner than I would have liked or expected. But as human being we adapt and we move on unperturbed.
Many years later still, I am still taking strong medication which is still giving me acne and other problems, having to choose my exercise with care and taking special measures in winter to stay warm and stay in bed longer in the dark mornings.
But as I have grown older and one would hope, wiser, I have had more time in those hospital waiting rooms to reflect on my fate. And I have slowly come to embrace my arthritis, despite the turbulent journey, or maybe owing to it. Long term illness has taught me much over the years.
Through being resigned to accept my condition and its progression, taking it a day at a time, I have come to realise especially post pandemic that we control very little but are so heedless to this profound fact. We are so desperate for control. This has been an accelerated journey to submitting to the only truth that is Allah and trusting his plan. His plan hasn’t been an easy one but a humbling one with much learning and growth
Through a weakening body that won’t cooperate and play ball, I have come to know with conviction that I am not my body. I take care of it as a responsibility, but I am not attached to it, I am a separate entity. I no longer have the pride and obsession with image, looks and the inevitable ageing process that I once had.
Through constant pain and ever weakening physical capability I have developed a deeper sense of compassion. I feel the pain and grief of others heartily. The loneliness and isolation long term conditions can leave the sufferer experiencing, as well as the diminished sense of self, has been linked to higher rates of anxiety and depression in these groups. As a community and within families we must reach out to each other more. Open up about our challenges and establish support networks. We must also make time as parents to explore the hidden internal world of our children, who may be suffering for a variety of reasons, unbeknown to us. Just confirming we are here to support them will give them immense reassurance and confidence to face fears and adverse events, whether it be a devastating sports injury that means they can no longer play their favourite sport, or with a mental health difficulty. It may seem small but to a child it’s all big.
Through exposure to other patients with progressive disease or bedbound and with little quality of life , I have learned the value of gratitude. Focusing on what is here rather than focusing on what is not. And as we celebrate the birth of my namesake Sayeda Zaynab this week, daughter of Imam Ali (AS), I am inspired by her resoluteness, strength and conviction. Her ability to stand firm beyond sadness, anger and grief, all the while seeing only beauty.
Through the pain I have been protected from a feeling of invincibility and needlessness of God, I am vulnerable and I need Him and I am eternally connected to Him. I am reminded with every stiff finger and swollen joint, with every blood test and test result – that we are absolutely in need of the mercy of Allah every passing second, as expressed in the beautiful Quranic verse: ‘My Lord, I am truly in desperate need of any good you bestow on me’ (28:24)
